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The Ribbon - Care for Caregivers
Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 4, Issue 10
November 22, 2000

www.TheRibbon.com

It's difficult to believe that the year 2000 is almost at a close. We are on the threshold of the Holiday Season, 2000.

For most people this is a busy, hectic and happy time of year. Hopefully, we all use the holidays to enjoy loved ones and friends, share memories of times past and look forward to the New Year with renewed vigor and enthusiasm.

For those of us who have the responsibility of caring for a loved one, the holidays can be a difficult time. Added activity and guests can agitate a person with Alzheimer's. Added errands and tasks to be accomplished can make the caregivers anxious.

We, The Ribbon staff, sincerely hope that each and every one of you, find some time for yourselves over this coming holiday season.  And on Thursday, Thanksgiving Day, please know that we will include all of you, our readers, on our lists of things to be thankful for.

Jamie, Karen & Kevin


Good News!!

There is a country music song out entitled "She Misses Him" by Tim Rushlow. He is the former lead singer of Little Texas. This song is about a couple's struggles with Alzheimer's. Be sure to have the tissues ready.

We would also like to say Thank You for your visits to The Ribbon website. We have now had over 11,000 hits!!! That is truly amazing and surpasses our wildest dreams.


When Our Parents Become Our Children
With the Holidays approaching, our attention focuses upon our families. Yet there are many who can't 'go home again'. Many are caregivers to their parents.

In September 1996, my husband, David and I had moved my father from his Wisconsin home of 45 years into our California home. In early 1997, while my 87-year old father and I were shopping at a local department store, he spotted a wallet misplaced in the candy aisle. He said, "Hey, a wallet! I'll look at it later," and he discretely placed it in his pocket.

I smiled and thought he was being cute. But he refused to put it back. I feared he might be arrested, handcuffed, and taken to jail for shoplifting. Then I imagined him in a panic wondering what had happened and why these people were restraining him. I would be helpless once the law stepped in. My father, a man who had never committed a crime, would be traumatized. He wouldn't understand why he was in jail.

Anticipating these consequences, I asked, "Mardig," (we called him by his first name, Mardig which is Armenian for Martin), "is that yours?"

"Shoosh," he said sternly, placing his index finger to his lips.

I grew more serious, "No, Mardig, is that wallet yours?"

"Well, it's not their's!" he exclaimed. "Because if it was, they would know where to place it," he reasoned.

I was perplexed. How do I get an adult, my father, to listen to me? "Please Mardig, take that wallet out of your pocket, now!" I insisted firmly in a low tone of voice. I didn't want to get him riled up.

"No!" he said, and began walking ahead of me.

"Mardig," I caught up to him and pulled his left arm as his left hand held the wallet in his pocket, "Please, you must give me that wallet. You can get arrested for stealing. You can go to jail!"

"Well, no one will know about it if you keep your voice down," he said.

Finally, I pulled his arm out of his pocket and reached in his left pocket and removed the wallet to his loud objections.

My father had been diagnosed with Alzheimer's after an extensive evaluation at the Center for Aging Research and Evaluation (CARE) at the Granada Hills Community Hospital. Alzheimer's causes people to forget and disorients them in time and place. It affects 12 million worldwide.

As I stood in that department store irritated at my father's behavior. I feared what others might perceive as a younger adult accosting an older man and stealing his wallet.

Yet, just as a responsible parent ensures his/her child follows the rules, I too had to make sure my father followed the law. The only difference is, a parent can teach his/her child what is right. Over time, the child will learn. My child, my father, could no longer learn because Alzheimer's disease is destroying his brain. This terminal disease--his death sentence--is taking my father away, piece-by-piece, from those he loves and from those who love him.

My father and I share a birthday--August 22nd. I came into this would on his 49th. All throughout my life, we were known as "the two Leos." My father would always say, "We Leos have to stick together."

This Holiday season, we will find ways to celebrate; yet many of us cannot go home to Mom and Dad. My mother passed away in 1993. My father cannot care for himself. He needs help with all the basic functions of life many of us take for granted-- toileting, dressing, showering, and now even eating. He no longer knows who his fellow Leo is as I feed him. Sometimes he doesn't even know how to swallow his food.

According to the National Family Caregivers Association (NFCA), there are 54 million caregivers in America who provide care for the elderly, disabled, chronically ill, friend or relative during the past year. This is twice the number initially thought. More than half of these caregivers are between 35 and 64 years old. Providing care for a family member during their key wage-earning years places a huge financial toll on their families. Beyond the economic burden, there is stress on the caregiver. It is estimated that 50 percent of caregivers suffer from depression due to the demands of caregiving.

No matter whom we care for, here are a few survival tips for caregivers adapted from the "Ten Suggestions" in "Where's my shoes?" My Father's Walk Through Alzheimer's.

  1. Recognize and accept that you cannot do it all by yourself.Try to define your limits and then enlist the help of family members, friends, organizations who can help you when you are stretched beyond those limits. Early on (and only after we were able to accept the idea) we took my father to the local Adult Day Care (ADC). This afforded him quality care and socialization opportunities. We even learned that he loved to dance and danced with the ladies, some ten and twenty years his junior, until he tired them out!

  2. Join a support group. These are groups of 5, 10, or even 20 people who are taking your journey (Alzheimer's/Dementia; MS; Bereavement; Stroke; Parkinson's, etc.) They may meet weekly or monthly. I thought I was much too intelligent and busy to make time for support group. Yet I had a lot of questions, which Roberta Widmer, Administrator of the local ADC, stopped answering because she wanted me to attend support group. That was the best thing she did for me. I have been attending since late October 1996 and these members have become my LIFE-support group!

  3. Take time for yourself. Whether it is an hour, a day, or a week; if you don't take a little time to replenish yourself, you will be unable to have the strength or health to care for your loved one. Sadly, I have seen, first the passing of caregivers and then their loved ones' care being left to the state or other family members and friends. There are no heroes among caregiver martyrs.

  4. Seek appropriate professional advice (medical, legal, financial).Do this early, especially with dementia-related illnesses. Once the person loses his/her ability to make decisions, the state will take control if prior arrangements have not been made.

  5. Treat your loved one with dignity. Approach him/her gently. Establish and maintain eye contact while speaking and listening to your loved one. Realize that you could be in your loved one's shoes and the recipient of your care.

Today, my father lives in a skilled nursing facility. After the intense and around-the-clock caregiving for one with Alzheimer's, David and I were not getting enough sleep and started to believe we were getting Alzheimer's just trying to keep up with my father's care! Placing him was the most emotionally difficult decision we made. Yet today he is thriving at age 90. Although he does not know me, and he uses a wheelchair most of the time, I visit him for a couple of hours once or twice a week. I help feed him and accept what the disease hasn't taken from my father during these times we share together.

The bittersweet joys are what we caregivers learn to accept. As we slowly lose our loved ones the joys get simpler and smaller, like feeding my father his dinner.


Brenda Avadian, M.A. is an author and professional speaker. Known as The Caregiver's Voice, she speaks nationally on caregiving issues and is the author of five books including "Where's my shoes?" My Father's Walk Through Alzheimer's plus the forthcoming titles, Caregiving 101 and Finding the JOY in Alzheimer's: Caregivers Share the JOYFUL times. You are welcome to email her directly at CAREVOICE@aol.com


Support Group Chat

I just read in your newsletter about the Eldercare chat being canceled. I should have emailed you this to get into today's newsletter. Better late... LOL Here is the blurb. Thanks.. Sue

I am doing an Alzheimer chat on the web Monday nights at 8pm if you want to put in a blurb next time, its www.allhealth.com (go to chats, scroll down on the weekly schedule to Alzheimer and click)  First timers need to register.

Any questions, you can email at: cl-suedox@ivillage.com or IM me at stss135.


Book Nook

Kevin,
My book is here & I am currently filling orders. There is a picture at my site & I would be glad to snail mail you a copy of the cover. I would appreciate it if you would spread the word for me. Thanks!!

http://www.a-spiderweb.com/My_Book_Art.htm

Sharon (RN) (Busy Momto4)
"SPIDERWEB'S CORNER"
HTTP://WWW.A-SPIDERWEB.COM
Order my special Book for your Child
Home-business resources, Catalog Shopping, Special Links & more!


What does the word "Thanksgiving" mean?

Thanksgiving
is the expression of gratitude and the giving of thanks.

Being thankful
is a feeling and a showing of gratitude.

To praise
means to verbally express your admiration, to honor and to glorify with song.

Being grateful
is feeling and showing appreciation for the kindness and benefits that have been given to YOU!

Thanksgiving is a time for families to create traditions and memories that last a lifetime.

What are YOU thankful for this year?
Take time to count every blessing and be thankful for all that you have!

MAY YOUR STUFFING BE TASTY,
MAY YOUR TURKEY BE PLUMP,
MAY YOUR POTATOES 'N GRAVY
HAVE NARY A LUMP,

MAY YOUR YAMS BE DELICIOUS,
MAY YOUR PIES TAKE THE PRIZE,
MAY YOUR THANKSGIVING DINNER
STAY OFF OF YOUR THIGHS.

Contributed by Emjay215


Roses

Sandra felt as low as the heels of her Birkenstocks as she pushed against a November gust and the florist shop door. Her life had been easy, like a spring breeze. Then in the fourth month of her second pregnancy, a minor automobile accident stole her ease. During this Thanksgiving week she would have delivered a son. She grieved over her loss. As if that weren't enough, her husband's company threatened a transfer. Then her sister, whose holiday visit she coveted, called saying she could not come. What's worse, Sandra's friend infuriated her by suggesting her grief was a God-given path to maturity that would allow her to empathize with others who suffer?

Had she lost a child? No! She has no idea what I'm feeling, thought Sandra with a shudder. Thanksgiving? Thankful for what, she wondered. For a careless driver whose truck was hardly scratched when he rear-ended her? For an airbag that saved her life but took that of her child?

"Good afternoon, can I help you?" The flower shop clerk's approach startled her.

"Sorry," said Jenny, "I just didn't want you to think I was ignoring you."

"I...I need an arrangement," stammered Sandra.

"For Thanksgiving?"

Sandra nodded.

"Do you want beautiful but ordinary, or would you like to challenge the day with a customer favorite I call the Thanksgiving Special?" Jenny saw Sandra's curiosity and continued. "I'm convinced that flowers tell stories, that each arrangement insinuates a particular feeling.

"Are you looking for something that conveys gratitude this Thanksgiving?"

"Not exactly!" Sandra blurted. "Sorry, but in the last five months, everything that could go wrong has."

Sandra regretted her outburst but was surprised when Jenny said, "I have the perfect arrangement for you."

The door's small bell suddenly rang.

"Barbara! Hi, let me get your order," Jenny said. She politely excused herself from Sandra and walked toward a small workroom. She quickly reappeared carrying a massive arrangement of greenery, bows, and long-stemmed thorny roses. Only, the ends of the rose stems were neatly snipped, no flowers.

"Want this in a box?" Jenny asked.

Sandra watched for Barbara's response. Was this a joke? Who would want rose stems and no flowers! She waited for laughter, for someone to notice the absence of flowers atop the thorny stems, but neither woman did.

"Yes, please. It's exquisite," Barbara replied with an appreciative smile. "You'd think after three years of getting the special, I'd not be so moved by its significance, but I can feel it right here, all over again." She gently tapped her chest. "My family will love this one. Thanks."

Sandra stared. Why so normal a conversation about so strange an arrangement? She wondered. "Uh," said Sandra, pointing. "That lady just left with, ah...uh.."

"Yes?"

"Well, you gave her no flowers!"

"Right, I cut off the flowers."

"Cut them off?"

"Off. Yep. That's the Special. I call it the Thanksgiving Thorns Bouquet."

"I just cannot believe people would pay for that!" In spite of herself she chuckled.

"Do you really want to know why?"

"I couldn't leave this shop without knowing. I'd think of nothing else!"

"That might be good," mused Jenny.

"Well," she continued, Barbara came into the shop three years ago feeling very much like you feel today. She thought she had very little to be thankful for. She had lost her father to cancer, the family business was failing, her son was into drugs, and she faced major surgery."

"Ooooh!" murmured Sandra.

"That same year, I had lost my husband," Jenny went on. "I assumed complete responsibility for the shop and for the first time, spent the holidays alone. I had no children, no husband, no family nearby, and too great a debt to allow any travel."

"What did you do?"

"I learned to be thankful for thorns."

Sandra's eyebrows lifted. "Thorns?"

"I'm a Christian, Sandra. I've always thanked God for good things in life and I never thought to ask Him why good things happened to me, but when bad stuff hit, did I ever ask! It took time to learn that dark times are important. I always enjoyed the 'flowers' of life but it took thorns to show me the beauty of God's comfort. You know, the Bible says that God comforts us when we're afflicted and from His consolation we learn to comfort others."

Sandra sucked in her breath as she thought about the very thing her friend had tried to tell her. "I guess the truth is I don't want comfort." "I've lost a baby and I'm angry with God." She started to ask Jenny to 'go on' when the door's bell diverted their attention.

"Hey, Phil!" shouted Jenny as a balding, rotund man entered the shop. She softly touched Sandra's arm and moved to welcome him. He tucked her under his side for a warm hug.

"I'm here for twelve thorny long-stemmed stems!" Phil laughed, heartily.

"I figured as much," said Jenny, "and I've got them ready." She lifted a tissue-wrapped arrangement from the refrigerated cabinet.

"Beautiful,"' exclaimed Phil. "My wife will love them!"

Sandra could not resist asking. "These are for your wife? Do you mind me asking, why thorns?"

"In fact, I'm glad you asked," Phil replied. "Four years ago my wife and I nearly divorced. After forty years, we were in a real mess, but with the Lord's guidance, we slogged through, problem by rotten problem. He rescued our marriage--our Love, really. Last year at Thanksgiving I stopped in here for flowers. I must have mentioned surviving a tough process because Jenny told me that for a long time she kept a vase of rose stems--stems!--as a reminder of what she learned from "thorny" times. That was good enough for me. I took home stems. My wife and I decided to label each one for a specific thorny situation and give thanks for what the problem taught us."

Phil paid Jenny, thanked her again and as he left, said to Sandra, "I highly recommend the Special!"

"I don't know if I can be thankful yet for the thorns in my life." Sandra said to Jenny. "It is still too fresh."

"Well," Jenny replied carefully, "my experience says that thorns make roses more precious. We treasure God's providential care more during trouble than at any other time. Remember, it was a crown of thorns that Jesus wore so we might know His love. Do not resent thorns."

Tears rolled down Sandra's cheeks. For the first time since the accident she loosened her grip on resentment. "I'll take those twelve long-stemmed thorns, please," she managed to choke out.

"I hoped you would," Jenny said. "I'll have the ready in a minute. Then, every time you see them, remember to appreciate both good and hard times. We grow through both."

"Thank you. What do I owe you?"

"Nothing. Nothing, but a promise to allow our Lord to heal your heart. The first year's arrangement is always on me." Jenny smiled and handed a card to Sandra. "I'll attach a card like this to your arrangement but maybe you'd like to read it first."

It said: "My God, I have never thanked Thee for my thorns! I have thanked Thee a thousand times for my roses, but never once for my thorns. Teach me the glory of the cross I bear, teach me the value of my thorns. Show me that I have climbed to Thee by the path of pain. Show me that my tears have made my rainbow..."
--George Matheson

Worrying does not empty tomorrow of its troubles.
It empties today of its strength....

Contributed by Many Readers


Again, to You and Yours
Happy Thanksgiving

Karen, Kevin, and Jamie

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